 
Tom Shakespeare
image: The Blind Leading the Blind - Seamus McKinlay
I. Introduction
In many countries of the world, disabled people and their allies have organised
over
the last three decades to challenge the historical oppression and exclusion of
disabled
people (Driedger, 1989; Campbell and Oliver, 1996; Charlton, 1998). Key to these
struggles has been the challenge to over-medicalised and individualist accounts
of
disability. While the problems of disabled people have been explained
historically in
terms of divine punishment, karma or moral failing, and post-Enlightenment in
terms
of biological deficit, the disability movement has focused attention onto social
oppression, cultural discourse and environmental barriers.
The global politics of disability rights and deinstitutionalisation has launched
a family
of social explanations of disability. In North America, these have usually been
framed using the terminology of minority groups and civil rights (Hahn, 1988).
In the
Nordic countries, the dominant conceptualisation has been the relational model
(Gustavsson et al, 2005). In many countries, the idea of normalisation and
social role
valorisation has been inspirational, particularly amongst those working with
people
with learning difficulties (Wolfensburger, 1972). In Britain, it has been the
social
model of disability which has provided the structural analysis of disabled
people’s
social exclusion (Hasler, 1993).
The social model emerged from the intellectual and political arguments of the
Union
of Physically Impaired Against Segregation (UPIAS). This network had been formed
after Paul Hunt, a former resident of the Lee Court Cheshire Home, wrote to The
Guardian newspaper in 1971, proposing the creation of a consumer group of
disabled
residents of institutions. In forming the organisation and developing its
ideology, Hunt worked closely with Vic Finkelstein, a South African psychologist, who had
come to Britain in 1968 after being expelled for his anti-apartheid activities.
UPIAS
was a small, hardcore group of disabled people, inspired by Marxism, who
rejected
the liberal and reformist campaigns of more mainstream disability organisations
such
as the Disablement Income Group and the Disability Alliance. According to their
policy statement (adopted December 1974), the aim of UPIAS was to replace
segregated facilities with opportunities for people with impairments to
participate
fully in society, to live independently, to undertake productive work and to
have full
control over their own lives. The policy statement defined disabled people as an
oppressed group and highlighted barriers:
-
“We find ourselves isolated and excluded by such things as flights of steps,
inadequate public and personal transport, unsuitable housing, rigid work
routines in
factories and offices, and a lack of up-to-date aids and equipment.” (UPIAS Aims
paragraph 1)
Even in Britain, the social model of disability was not the only political
ideology on
offer to the first generation of activists (Campbell and Oliver, 1996). Other
disabledled
activist groups had emerged, including the Liberation Network of People with
Disabilities. Their draft Liberation Policy, published in 1981, argued that
while the
basis of social divisions in society was economic, these divisions were
sustained by
psychological beliefs in inherent superiority or inferiority. Crucially, the
Liberation
Network argued that people with disabilities, unlike other groups, suffered
inherent
problems because of their disabilities. Their strategy for liberation included:
developing connections with other disabled people and creating an inclusive
disability
community for mutual support; exploring social conditioning and positive
selfawareness;
the abolition of all segregation; seeking control over media representation;
working out a just economic policy; encouraging the formation of groups of
people
with disabilities.
However, the organisation which dominated and set the tone for the subsequent
development of the British disability movement, and of disability studies in
Britain,
was UPIAS. Where the Liberation Network was dialogic, inclusive and feminist,
UPIAS was hard-line, male-dominated, and determined. The British Council of
Organisations of Disabled People, set up as a coalition of disabled-led groups
in 1981,
adopted the UPIAS approach to disability. Vic Finkelstein and the other BCODP
delegates to the first Disabled People’s International World Congress in
Singapore
later that year, worked hard to have their definitions of disability adopted on
the
global stage (Driedger, 1989). At the same time, Vic Finkelstein, John Swain and
others were working with the Open University to create an academic course which
would promote and develop disability politics (Finkelstein, 1998). Joining the
team
was Mike Oliver, who quickly adopted the structural approach to understanding
disability, and was to coin the term “social model of disability” in 1983.
II. What is the social model of disability?
While the first UPIAS Statement of Aims had talked of social problems as an
added
burden faced by people with impairment, the Fundamental Principles of Disability
discussion document, recording their disagreements with the reformist Disability
Alliance, went further:
-
”In our view, it is society which disables physically impaired people.
Disability is
something imposed on top of our impairments, by the way we are unnecessarily
isolated and excluded from full participation in society. Disabled people are
therefore
an oppressed group in society.” (UPIAS, 1975)
Here and in the later development of UPIAS thinking are the key elements of the
social model: the distinction between disability (social exclusion) and
impairment
(physical limitation) and the claim that disabled people are an oppressed group.
Disability is now defined, not in functional terms, but as
“the disadvantage or restriction of activity caused by a contemporary social
organisation which takes little or no account of people who have physical
impairments and thus excludes them from participation in the mainstream of
social
activities.” (op cit)
This redefinition of disability itself is what sets the British social model
apart from all
other socio-political approaches to disability, and what paradoxically gives the
social
model both its strengths and its weaknesses.
Key to social model thinking is a series of dichotomies:
1. Impairment is distinguished from disability. The former is individual and
private,
the latter is structural and and public. While doctors and professions allied to
medicine seek to remedy impairment, the real priority is to accept impairment
and to
remove disability. Here there is an analogy with feminism, and the distinction
between biological sex (male and female) and social gender (masculine and
feminine)
(Oakley, 1972). Like gender, disability is a culturally and historically
specific
phenomenon, not a universal and unchanging essence.
2. The social model is distinguished from the medical or individual model.
Whereas
the former defines disability as a social creation – a relationship between
people with
impairment and a disabling society – the latter defines disability in terms of
individual
deficit. Mike Oliver writes:
-
“Models are ways of translating ideas into practice and the idea underpinning
the
individual model was that of personal tragedy, while the idea underpinning the
social
model was that of externally imposed restriction.” (Oliver, 2004, 19)
Medical model thinking is enshrined in the liberal term “people with
disabilities”, and
in approaches which seek to count the numbers of people with impairment, or
which
reduce the complex problems of disabled people to issues of medical prevention,
cure
or rehabilitation. Social model thinking mandates barrier removal,
antidiscrimination
legislation, independent living and other responses to social
oppression. From a disability rights perspective, social model approaches are
progressive, medical model approaches are reactionary.
3. Disabled people are distinguished from non-disabled people. Disabled people
are
an oppressed group, and often non-disabled people and organisations – such as
professionals and charities – are the causes or contributors to that oppression.
Civil
rights, rather than charity or pity, are the way to solve the disability
problem.
Organisations and services controlled and run by disabled people provide the
most
appropriate solutions. Research accountable to, and preferably done by, disabled
people offers the best insights.
For more than ten years, a debate has raged in Britain about the value and
applicability of the social model (Morris, 1991, Crow, 1992, French, 1993,
Williams,
1999; Shakespeare and Watson 2002). In response to critiques, academics and
activists maintain that the social model has been misunderstood, misapplied, or
even
wrongly viewed as a social theory. Many leading advocates of the social model
approach maintain that the essential insights developed by UPIAS in the 1970s
still
remain accurate and valid three decades later.
III. Strengths of the social model
As demonstrated internationally, disability activism and civil rights are
possible
without adopting social model ideology. Yet the British social model is arguably
the
most powerful form which social approaches to disability have taken. The social
model is simple, memorable and effective, each of which is a key requirement of
a
political slogan or ideology. The benefits of the social model have been shown
in
three main areas.
First, the social model, which has been called “the big idea” of the British
disability
movement (Hasler, 1993), has been effective politically in building the social
movement of disabled people. It is easily explained and understood, and it
generates
a clear agenda for social change. The social model offers a straightforward way
of
distinguishing allies from enemies. At its most basic, this reduces to the
terminology
people use: “disabled people” signals a social model approach, whereas “people
with
disabilities” signals a mainstream approach.
Second, by identifying social barriers which should be removed, the social model
has
been effective instrumentally in the liberation of disabled people. Michael
Oliver
argues that the social model is a “practical tool, not a theory, an idea or a
concept”
(2004, 30). The social model demonstrates that the problems disabled people face
are
the result of social oppression and exclusion, not their individual deficits.
This places
the moral responsibility on society to remove the burdens which have been
imposed,
and to enable disabled people to participate. In Britain, campaigners used the
social
model philosophy to name the various forms of discrimination which disabled
people
(Barnes, 1991), and used this evidence as the argument by which to achieve the
1995
Disability Discrimination Act. In the subsequent decade, services, buildings and
public transport have been required to be accessible to disabled people, and
most
statutory and voluntary organisations have adopted the social model approach.
Third, the social model has been effective psychologically in improving the
selfesteem
of disabled people and building a positive sense of collective identity. In
traditional accounts of disability, people with impairments feel that they are
at fault.
Language such as “invalid” reinforce a sense of personal deficit and failure.
The
focus is on the individual, and on her limitations of body and brain. Lack of
selfesteem
and self-confidence is a major obstacle to disabled people participating in
society. The social model has the power to change the perception of disabled
people.
The problem of disability is relocated from the individual, to the barriers and
attitudes
which disable her. It is not the disabled person who is to blame, but society.
She
does not have to change, society does. Rather than feeling self-pity, she can
feel
anger and pride.
IV. Weaknesses of the social model
The simplicity which is the hallmark of the social model is also its fatal flaw.
The
social model’s benefits as a slogan and political ideology are its drawbacks as
an
academic account of disability. Another problem is its authorship by a small
group
of activists, the majority of whom had spinal injury or other physical
impairments and
were white heterosexual men. Arguably, had UPIAS included people with learning
difficulties, mental health problems, or with more complex physical impairments,
or
more representative of different experiences, it could not have produced such a
narrow understanding of disability.
Among the weaknesses of the social model are:
1. The neglect of impairment as an important aspect of many disabled people’s
lives.
Feminists Jenny Morris (1991), Sally French (1993) and Liz Crow (1992) were
pioneers in this criticism of the social model neglect of individual experience
of
impairment:
“As individuals, most of us simply cannot pretend with any conviction that our
impairments are irrelevant because they influence every aspect of our lives. We
must
find a way to integrate them into our whole experience and identity for the sake
of our
physical and emotional well-being, and, subsequently, for our capacity to work
against Disability”. [Crow, 1992, 7]
The social model so strongly disowns individual and medical approaches, that it
risks
implying that impairment is not a problem. Whereas other socio-political
accounts of
disability have developed the important insight that people with impaired are
disabled
by society as well as by their bodies, the social model suggests that people are
disabled by society not by their bodies. Rather than simply opposing
medicalisation, it
can be interpreted as rejecting medical prevention, rehabilitation or cure of
impairment, even if this is not what either UPIAS, Finkelstein, Oliver or Barnes
intended. For individuals with static impairments, which do not degenerate or
cause
medical complications, it may be possible to regard disability as entirely
socially
created. For those who have degenerative conditions which may cause premature
death, or which any condition which involves pain and discomfort, it is harder
to
ignore the negative aspects of impairment. As Simon Williams has argued,
“… endorsement of disability solely as social oppression is really only an
option, and
an erroneous one at that, for those spared the ravages of chronic illness.”
(Williams,
1999, 812)
Carol Thomas (1999) has tried to develop the social model to include what she
calls
“impairment effects”, in order to account for the limitations and difficulties
of
medical conditions. Subsequently, she subsequently suggested that a relational
interpretation of the social model enables disabling aspects to be attributed to
impairment, as well as social oppression :
-
“once the term ‘disability’ is ring-fenced to mean forms of oppressive social
reactions
visited upon people with impairments, there is no need to deny that impairment
and
illness cause some restrictions of activity, or that in many situations both
disability
and impairment effects interact to place limits on activity.” (2004, 29)
One curious consequence of the ingenious reformulation is that only people with
impairment who face oppression can be called disabled people. This relates to
another problem:
2. The social model assumes what it needs to prove: that disabled people are
oppressed. The sex/gender distinction defines gender as a social dimension, not
as
oppression. Feminists claimed that gender relations involved oppression, but did
not
define gender relations as oppression. However, the social model defines
disability as
oppression. In other words, the question is not whether disabled people are
oppressed
in a particular situation, but only the extent to which they are oppressed. A
circularity
enters into disability research: it is logically impossible for a qualitative
researcher to
find disabled people who are not oppressed.
3. The analogy with feminist debates about sex and gender highlights another
problem: the crude distinction between impairment (medical) and disability
(social).
Any researcher who does qualitative research with disabled people immediately
discovers that in everyday life it is very hard to distinguish clearly between
the impact
of impairment, and the impact of social barriers (see for example Watson, 2002;
Sherry, 2002). In practice, it is the interaction of individual bodies and
social
environments which produces disability. For example, steps only become an
obstacle
if someone has a mobility impairment: each element is necessary but not
sufficient for
the individual to be disabled. If a person with multiple sclerosis is depressed,
how
easy is it to make a causal separation between the effect of the impairment
itself; her
reaction to having an impairment; her reaction to being oppressed and excluded
on the
basis of having an impairment; other, unrelated reasons for her to be depressed?
In
practice, social and individual aspects are almost inextricable in the
complexity of the
lived experience of disability.
Moreover, feminists have now abandoned the sex/gender distinction, because it
implies that sex is not a social concept. Judith Butler (1990) and others show
that
what we think of as sexual difference is always viewed through the lens of
gender.
Shelley Tremain (2002) has claimed similarly that the social model treats
impairment
is an unsocialised and universal concept, whereas, like sex, impairment is
always
already social.
4. The concept of the barrier-free utopia. The idea of the enabling environment,
in
which all socially imposed barriers are removed, is usually implicit rather than
explicit in social model thinking, although it does form the title of a major
academic
collection (Swain et al, 1993). Vic Finkelstein (1981) also wrote a simple
parable of
a village designed for wheelchair users to illustrate the way that social model
thinking
turned the problem of disability on its head. Yet despite the value of
approaches such
as Universal Design, the concept of a world in which people with impairments
were
free of environmental barriers is hard to operationalise.
For example, many parts of the natural world will remain inaccessible to many
disabled people: mountains, bogs, beaches are almost impossible for wheelchair
users
to traverse, while sunsets, birdsong and other aspects of nature are difficult
for those
lacking sight or hearing to experience. In urban settings, many barriers can be
mitigated, although historic buildings often cannot easily be adapted. However,
accommodations are sometimes incompatible because people with different
impairments may require different solutions: blind people prefer steps and
defined
curbs and indented paving, while wheelchair users need ramps, dropped curbs, and
smooth surfaces. Sometimes, people with the same impairment require different
solutions: some visually impaired people access text in Braille, others in large
print,
audio tape or electronic files. Practicality and resource constraints make it
unfeasible
to overcome every barrier: for example, the New York subway and London
Underground systems would require huge investment to make every line and station
accessible to wheelchair users. A copyright library of five million books could
never
afford to provide all these texts in all the different formats which visually
impaired
users might potentially require. In these situations, it seems more practical to
make
other arrangements to overcome the problems: for example, Transport for London
have an almost totally accessible fleet of buses, to compensate those who cannot
use
the tube, while libraries increasingly have arrangements to make particular
books
accessible on demand, given notice.
Moreover, physical and sensory impairments are in many senses the easiest to
accommodate. What would it mean to create a barrier free utopia for people with
learning difficulties? Reading and writing and other cognitive abilities are
required
for full participation in many areas of contemporary life in developed nations.
What
about people on the autistic spectrum, who may find social contact difficult to
cope
with: a barrier free utopia might be a place where they did not have to meet,
communicate with, or have to interpret other people. With many solutions to the
disability problem, the concept of addressing special needs seems more coherent
than
the concept of the barrier free utopia. Barrier free enclaves are possible, but
not a
barrier free world.
While environments and services can and should be adapted wherever possible,
there
remains disadvantage associated with having many impairments which no amount of
environmental change could entirely eliminate. People who rely on wheelchairs,
or
personal assistance, or other provision are more vulnerable and have fewer
choices
than the majority of able-bodied people. When Michael Oliver claims that
“An aeroplane is a mobility aid for non-flyers in exactly the same way as a
wheelchair
is a mobility aid for non-walkers.” (Oliver, 1996, 108)
his suggestion is amusing and thought provoking, but cannot be taken seriously.
As
Michael Bury has argued,
“It is difficult to imagine any modern industrial society (however organised) in
which,
for example, a severe loss of mobility or dexterity, or sensory impairments,
would not
be ‘disabling’ in the sense of restricting activity to some degree. The
reduction of
barriers to participation does not amount to abolishing disability as a whole.”
(Bury,
1997, 137)
Drawing together these weaknesses, a final and important distinction needs to be
made. The disability movement has often drawn analogies with other forms of
identity politics, as I have done in this paper. The disability rights struggle
has even
been called the “Last Liberation Movement” (Driedger, 1989). Yet while disabled
people do face discrimination and prejudice, like women, gay and lesbian people,
and
minority ethnic communities, and while the disability rights movement does
resemble
in its forms and activities many of these other movements, there is a central
and
important difference. There is nothing intrinsically problematic about being
female or
having a different sexual orientation, or a different skin pigmentation or body
shape.
These other experiences are about wrongful limitation of negative freedom.
Remove
the social discrimination, and women and people of colour and gay and lesbian
people
will be able to flourish and participate. But disabled people face both
discrimination,
but also intrinsic limitations. This claim has three implications. First, even
if social
barriers are removed as far as practically possible, it will remain
disadvantageous to
have many forms of impairment. Second, it is harder to celebrate disability than
it is
to celebrate Blackness, or Gay Pride, or being a woman. “Disability pride” is
problematic, because disability is difficult to recuperate as a concept, as it
refers either
to limitation and incapacity, or else to oppression and exclusion, or else to
both
dimensions. Third, if disabled people are to be emancipated, then society will
have to
provide extra resources to meet the needs and overcome the disadvantage which
arises
from impairment, not just work to minimise discrimination (Bickenbach et al,
1999).
V. Beyond the social model?
In this chapter, I have tried to offer a balanced assessment of the strengths
and
weaknesses of the British social model of disability. While acknowledging the
benefits of the social model in launching the disability movement, promoting a
positive disability identity, and mandating civil rights legislation and barrier
removal,
it is my belief that the social model has now become a barrier to further
progress.
As a researcher, I find the social model unhelpful in understanding the complex
interplay of individual and environmental factors in the lives of disabled
people. In
policy terms, it seems to me that the social model is a blunt instrument for
explaining
and combatting the social exclusion that disabled people face, and the
complexity of
our needs. Politically, the social model has generated a form of identity
politics
which has become inward looking and separatist.
A social approach to disability is indispensable. The medicalisation of
disability is
inappropriate and an obstacle to effective analysis and policy. But the social
model is
only one of the available options for theorising disability. More sophisticated
and
complex approaches are needed, perhaps building on the WHO initiative to create
the
International Classification of Functioning, Disability and Health. One strength
of
this approach is the recognition that disability is a complex phenomenon,
requiring
different levels of analysis and intervention, ranging from the medical to the
sociopolitical.
Another is the insight that disability is not a minority issue, affecting only
those people defined as disabled people. As Irving Zola (1989) maintained,
disability
is a universal experience of humanity.
ϟ
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